A Message to Parents Who Have Received a Prenatal Diagnosis of Down Syndrome
At the Silicon Valley Down Syndrome Network (SVDSN), we would like for you to know that you are not alone. Many of us are parents who also received a prenatal diagnosis of Down syndrome and we truly understand how difficult it is to hear that unexpected news. We are a safe place to turn to with your questions and you are invited to share your feelings with people here who understand. We pledge to you that we will reach out to you with compassion and great care. We will not judge.
There is no right or wrong way to react to a prenatal diagnosis. We all have our distinctive situations and come from unique life experiences. The thing that we all have in common, however, is that we all have hopes and dreams for our children. That extra 21st chromosome just usually isn't part of the plan as we set out to start our families.
Some expectant parents react by experiencing intense emotions at first: shock, dismay, fear, anger, etc. Please know that such emotions are a perfectly normal response. Many expectant parents enter a time of decision-making. We offer to you the opportunity to speak with experienced parents who can answer your questions and provide a realistic picture of raising a child with Down syndrome. We will answer your questions honestly and do our best to describe the joys and challenges we have experienced in our own personal journeys.
We understand that not all birth families feel they are able to meet the needs of children with Down syndrome. The National Down Syndrome Adoption Network provides information to birth families who may be seeking alternatives to parenting as they prepare for the arrival of their child. The network currently has over 200 registered families, each waiting to adopt a baby with Down syndrome.
Other expectant parents are surprised and sad at first, but they make plans to welcome the baby into their lives. They gather as much information as they can and become determined to make adjustments during the pregnancy so that the birth will be a joyous occasion.
Often an opportunity to speak with other parents who have experienced what you are experiencing can be invaluable. SVDSN’s Parents First Call Program is a volunteer group of trained parent mentors available 24/7 to listen, share, answer questions, and provide valuable information. If you would like to speak with a First Call parent who also received a prenatal diagnosis, please call 408-673-0775 or e-mail us at firstname.lastname@example.org.
No matter how you might be feeling, we are available to answer your questions honestly and do our best to describe the joys and challenges we have experienced in our own personal journeys.
We Hope these Prenatal Diagnosis Resources are Useful!
National booklet "Understanding a Down Syndrome Diagnosis"
The 2011 edition of "Understanding a Down Syndrome Diagnosis" contains the latest medical and developmental information about people with Down syndrome as well as local and national resources, pregnancy options and helpful visuals and graphics. This booklet has been reviewed by all the major medical organizations involved in expectant mothers’ health. Download a digital copy here.
Down Syndrome Pregancy.org was established to provide information and support to expectant parents preparing for the birth of a baby with Down syndrome. It includes information, material, blogs and discussion boards.
Light At the End of the Tunnel (PDF)